Lorenzo

Lorenzo, 53 years - Bacchereto (PO), Tuscany

Dear Lorenzo,

Huntington's disease, 'The Beast' as we use to name it, took you away from us on the last September, after devastating us, from every point of view.

Since 'The Beast' entered in our lives, I have slowly lost all of you. The disease had transformed you through and through, robbing me of my loved one. Our life has become more and more complicated in the practical and everyday aspects, to the point of making us feel a sort of hatred and resentment towards the injustice of fate.

The last few months have been particularly tough. Although we were both vaccinated, we both got Covid: I was asymptomatic, while you ended up in the Hospital intensive care. Your condition has become complicated: lung infections, difficulty breathing, swallowing and feeding.

I was at home in quarantine and could not come to see you until I became negative. When I finally was fine, I only managed to visit you a couple of times to say hello. Not being able to touch you, to take your hand or caress you was a huge pain for me. In those few and rare visits, the only real joy was seeing your eyes change expression and light up when they met mine.

Doctors have  placed me in front of very difficult and invasive choices many times. Although you have always declared yourself against therapeutic persistence, when the time comes, all beliefs falter. It is never easy, but there comes a time when you have to accept the inevitability of death.

A few days after you passed away, I felt you close to me, I felt you "free, light and finally happy" and my anguish has subsided a little. A feeling of release from a huge burden. Sometimes I think I didn't lose you in September 2021, but many years ago. Only your body was left in its place. Actually not even it, because 'The Beast' also changes the body, the face and above all the gaze.

Little by little the memories of the "healthy" Lorenzo come to my mind. I remember how beautiful your eyes were that lit up when you laughed, your deep looks that had literally kidnapped me, your smiles that made me vibrate, your gaze full of love and, at the same time, yearning for our child.

Now I am starting to remember you. I want to remember you as the wonderful person you were, with a great desire to believe in life. I hope that one day our son will also remember you as the extraordinary person you were before the illness.

I want to see your death as a beautiful gift from you: to avoid to us, and to yourself, further suffering and pain.

I might seem cynical, selfish, numb, but suffering has absolutely changed me and now I see things from another perspective.

The 'Huntington world' has become an integral part of my life, it has entered my skin, my soul, my heart. My best companions in life, the people who can truly understand the suffering and pain that this disease entails are only those who experience it firsthand.

This is my official greeting to you Lorenzo, my great man, my husband, to the great person you proved to be until the end.

I need to tell you, I need to remind you that, despite everything, my love for you is still alive.

Fiorella, your wife

*****

Hi Dad, we're all fine down here, but the couch is empty.

Right after you left us, things didn't go well at all.
We tried to make people believe we were fine, but down deep we were not.

You left with suffering, both for us and for you. The period certainly didn't help, but by reading between the lines, you made us understand that you had enough of that (hospital) room, you had had enough of all those visits, you had had enough of everything, and you wanted to go home.

Home, which you knew from the beginning that it would be the place where your family would have welcomed the end of your incredible race. Unfortunately, it was not like that. A number of stupid coincidences hastened the times, and put you in a tight spot: you couldn't go home, you couldn't see us again, and all this annoyed you.

Things could not go as we had foreseen, because you needed strength that (because of the pandemic) we could not give you. You needed to be healthy, but you were not. 

Fate wanted an aseptic room to be your last home. 

We cannot say that we weren't aware that you were near to the end of your race. It was our first thought every day. The fact is that when you imagine bad things, you think they will concern you in a long time. You do not realize that the worst happens when you least expect it.

I had imagined over and over what it might be like that day, but, in hindsight, I was terribly wrong. I could never have expected a scenario where we could only hope and remain helpless, before the beginning of the decline.

To say the truth, the "decline" has been happening over time, a bit like when a  painting loses its color over the years: you don't realize how much color it loses from day to day. You only realize it after months or years, when you finally look at it.

I have always told myself that I would be able to accept your death only after having really shown you who I really was and what I was worth. That is what every son aspires to. But the more time passed, the worse you got and so, for this very reason, even mom and I were not always able to give the best of ourselves, in everything and everyone. And even if you might not have even realized it, that's the way I wanted things to go.

Well, as mentioned before, nothing went as planned, and you shut down without giving me time to show you who I was. And that didn't suit me.

Actually nothing has changed, but this: now I have one more reason to take the world, I have a person who watches from the "higher" stands, to whom I have to prove that I am a person of value. I hope, at least half of yours.

I think I could write a book with the things I would have to tell you. Maybe one day I will, who knows.

I have learned to manage emotions, because you needed our help. That was the most important thing. Maybe I only realized it now, maybe I didn't want to understand it, or maybe you can't understand how big a thing really is, until you bump into it. Perhaps for this reason, I perceived reality as truth.

To date, what we are left with is a distorted memory from the disease, where you were a victim of your own DNA. And where this had touched all of us.

But the memory I want to have, instead, is the portrait of the person you were, as mom and I remember you. The person who made Mom fall in love. The person who raised me, very different from the one who was among us lately. Now it's up to us to create the best memory of you, the best memory, a memory that gives you justice, a memory that shines as much as you did. It is up to us to remember all of this.

I'll take the world dad, with you and for you.

Leonardo, your son.

The picture was taken in the context of